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Can’t Multiple Myeloma Patients, Caregivers & Bloggers Just Get Along?

Posted on February 24 2010 by Pat Killingsworth | 2,797 views

The “blogosphere” can be a turbulent place. Those of you who passively read sites like mine would be surprised to learn how crazy things can get behind the scenes. For every one comment someone makes publicly on my blog, I get many, many “off the record” e-mails as well—especially when I write about or post an article on a controversial subject like Total Therapy. The last few days have been no exception. Our readers can be passionate—even manic when it comes to supporting their or their loved one’s multiple myeloma therapy choices. And why not? We are talking possible life and death here! Patients, but especially caregivers can get very defensive when faced with the possibility they may have made wrong treatment decision. No, let me re-phrase that: Since there are no “wrong” therapy decisions (We all make the best choices we have available to us—based on the information we have at the time) human nature still insists we defend our choices. It is only human nature to fight for the one you love—and to support the life decisions you have made. You want angry? I’ll give you angry—discover unexpectedly that you or your lived one has cancer! And talk about piling on—later you learn you weren’t presented with or given all of the available treatment options that should have been available to you.

Anyway, back to my original point: Lately, behind the scenes, the therapy debate has become angry and uncivil. Maybe it’s just a sign of the times. Anyone who follows American politics lately has seen first-hand how polarizing and partisan things have become. Many Americans are angry for a whole host of reasons—the economy, foreign conflict, divergent social and religious opinions. Now, some of that seems to be spilling over into debates like “cure vs control.”

I have been accused of not supporting previous statements I have made about the in curability of mm. Please remember I am only the messenger here! I have mm and desperately want someone to discover a cure. But I can hope and dream and wish all I want—that doesn’t make it so! One reason I don’t site or support my statements more often is I don’t want to seem like I am “piling on.” By that I mean, the more I reinforce controversial statements I make, the more I’m identified with those statements. This isn’t an “us vs them” situation. I’m not hoping to be right or rooting for one position or another.

OK—by request—I didn’t have to go far to find a source supporting my “the mainstream medical community doesn’t consider multiple myeloma curable” statement. Remember yesterday’s post from Dr. Rajkumar, myeloma research expert at Mayo Clinic? Dr. Rajkumar states:

Myeloma is generally not considered a curable disease; however, new definitions of cure have been suggested, including operational cure, which is defined as a sustained complete response (CR) for a prolonged period.1,2 Cure vs control is debated because the strategies currently being tested are not truly curative but rather are intended to maximize response rates in the hope that they will translate into an operational cure for a subset of patients.

That’s as liberal an interpretation as you will find. Here are a few more.  From Merck.com:  For the vast majority of us, multiple myeloma is not a curable cancer at this time.   From Familydoctor.com:  There is currently no cure for multiple myeloma.  I could site more examples, but you get the picture.

Researchers and myeloma docs world-wide are all racing to find a cure and improve patient’s quality of life. The bottom line: Let’s not fight over semantics. Let’s not make disparaging statements about another mm patient’s therapy or institution of choice. Let’s all support making mm research as open and transparent as possible—and let’s all thank God that multiple myeloma patients have any choices at all! Take your meds of choice, eat well, exercise and enjoy life the best you can and let the researchers do their thing! We patients and caregivers need to stick together, don’t you think?

Feel good, keep smiling and please be kind to your doctors, nurses, fellow patients, bloggers and caregivers! Pat

6 Comments For This Post

  1. Steven L. Ritter Says:

    Pat: Here is what I think.. I have smoldering Myeloma so all the treatment choices are just that choices, at this time. Your blog is my "go to" blog for the education I will need to make the proper decision, for me, when that time comes. I had already read the post by S. Vincent Rajkumar, MD and I have it saved to my laptop. I have several blogs I follow who have chosen the control option and I also follow Nick's blog for the cure option closely. My oncologist is open to both treatment options. I agree that when treatment options become more than an option, and moves into a "cause", it doesn't help us, who will need to take all the current treatment options and pick one. You do a great job in explaining the research and giving us the tools to continue our own research. Keep up the good work.. and thank you…

  2. Cindy K. Says:

    Pat-You don't know how much this post helped ME! I was very disheartened & you just put wind in my sails. I'm sorry of what you've experienced behind the scenes. Please don't let the few change what you do! I think some ppl like to be argumentative or fight! I recently posted a ques to someone who's noted me before. Yes, it's a very volatile time in the World. I asked a lady's opinion about her country's HC vs ours. I sought her advice, I was NOT being insulting. I explained to her why I was worried. Instead of replying on my blog, she posts my name & ques on her blog front page & proceeds to insult me & some people in my country for our ways! It took me a while before I saw her entry! She presented it in such a way that her followers felt compelled to also add insults in her notes. Then the NEXT entry she suggested readers GO BACK to read all the nasty notes! I was stunned. I intended no harm with my ?, but her intentions WERE mean-spirited. I let it go, as nothing would be gained by my response OR defense. So THANK YOU, dear Pat, for this post. YOU too, have felt the pangs of the behind-the-scenes silliness. I'm not alone.

  3. Jan Says:

    This is a good reminder for me. When another MM patient comes to me asking for input, I need to be so careful not to try to sell them on my specific treatment center. I had someone early in my MM experience call me and tell me I was going to the wrong place and I need to go where they had went. Sadly, that turned me off from maintaining a relationship with them that might have proved helpful in many areas. They had great results from their treatment center and so have I. And if we were honest, we both know of others who did the same treatment as us in both places and are no longer with us.
    Keep posting Pat, we need your calm voice.

  4. Pat Killingsworth Says:

    Thank you, Steven, Cindy and Jan! Your kind words help keep me going! I haven't posted about it yet, but I have some important choices to make myself soon… My M-spike is back and measurable for the first time in over two years. I need all of you, too! Pat

  5. Lori Puente Says:

    Indeed you are all quite right. I grew up with wonderful grandparents who would have nightly discussions at the dinner table when I was very young. I loved that we all could state our ideas, thought thru well or not, and never come away feeling wronged, belittled, or judged. It wasn't until I was much older that I realized what a gift they gave me of civilized debate. It is sometimes hard for folks to keep their emotions out of the discussion and in a civil manner express their views and be validated for them while at the same time perhaps, being enlightened. As many of you know, I chose LR for my husband's treatment and while I feel the debate in cancer treatment and MM in particular is one that needs to happen, I get frustrated when it moves from the science to the personalities. A personality will not fix my husband's MM and is of little value to me. 🙂

    Since there is no cure or universal treatment, we are all on the hunt and I for one, appreciate knowing how everyone is doing and WHAT they are doing and hope we all do well with the choices we have made.

    RESPECTFULLY!

    Lori Puente
    http://www.caringbridge.org/visit/davidpuente
    [email protected]

  6. Pat Killingsworth Says:

    Right on, Lori! "Respectfully" is a word we should all embrace when discussing options for dealing with and treating our cancer- Pat

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